Midnight

 It's almost midnight. I'm wearing a t-shirt announcing the important reality: "Pudge controls the weather." The Princess & The Frog is announcing Bayou Back Bay queens in the background.

It feels as though a bowling ball is breaking my ribs as it rams under my ribcage to destinations unknown.

So here we are. Less than 15 minutes left in my Saturday. I've had 2 good days in 9. Most of those days were me laying in bed - some sleeping, most not getting up for anything beyond medications, food, or using the bathroom.

Thursday was an okay day. I fought hard to get my tiny list of errands done. Even got blood work done on my monthly schedule.

The 9 AM Friday phone call surprised me. The news that weekly blood work is my new routine was, and is, a 2 layer puzzle.

I can explain why I have to be watched so closely. I know every medical term. I can give you estimates on prognosis and other clinical data.

I can also tell you I want my Mom. That comfort, that determined attitude that "only the best of outcomes is happening. Non-negotiable." My Mom was incredibly capable and strong. It would be fine if it was a silent moment. Just a hug. I think that would be enough.

The truth is that I'm sicker. It took me 5 years to jump 5 points on the "how bad it is & how high on the list for transplant" scale. In the last 3 weeks I've jumped 8 points.

What does that mean? Medically I'm in a fragile position. Personally? It's harder to face down the fear. No one can tell me how much worse I'll be by the time a liver is available for me.

So it's just past midnight. I'm enjoying Disney, hoping the pain will shift enough to allow sleep. I'm intellectually prepared for the world's shift to new reality. And I'm scared.

Please don't ask me what you can do. I don't know what I can do so I have no grasp on what I can say "please help by" yet. Video chats are wonderful! Pictures and texts, phone calls... Wonderful. I beg your patience. I'm swimming with anchors and chains. If I forget important things, if I miss a party or celebration? I still love you. I'm still here. Just trying to find my way forward, and straight on through.